But one of the things I struggled with when I learned about SRV was that it does an excellent job of laying out what not to do, but falls a little short on what to do. Granted, it says “find valued roles,” and “enhance people’s image.” But obviously there’s a need for some guidance on action, since people with disabilities are still living the same kinds of lives they lived 20 years ago.
So the question is: “what should we be doing?”
When I asked her this question, Jo Krippenstapel gave me a copy of this article by John O’Brien: “What’s Worth Working For? Leadership For Better Quality Human Services”
In it, John details five valued experiences that help people with disabilities live good lives. He also details five correlated “service accomplishments” that services/agencies/organizations could strive toward to help people have more of the valued experiences:
It’s a pretty simple place to start, which is why it’s such a brilliant and perfect answer to the question “What should we be doing?”
If we think about our own lives (and the lives of everyone we know) within the context of the Five Valued Experiences, the answer becomes apparent. And it turns out that it’s not expensive, anyone can do it, and it’s not all that hard to get started:
Is life better if you have a lot of places that you share with other people? Of course! If you only hang out at home and work, you are missing out on church, cafes, parks, town squares, sidewalks, museums, and lots of other places. These places are vibrant community spaces that anyone can use. We meet our best friends and future partners at these places. We take our children to these places to meet up with other children. These are the places we feel safe and come together as a community or neighborhood. Jan Gehl, world-renowned architect, argues that shared public spaces are the basis for a thriving, vibrant democracy. He has examples of totalitarian regimes who started by shutting down town squares to squelch dissent. Our own constitution guarantees the right to “peaceably assemble.”
Ray Oldenburg talks about “third places” (first= home, second=work) as important places where we meet each other and network on equal footing. They are essential to building a good life.
But what if you were only allowed to go to places that were designed for people with your same label? For most people with disabilities, they only get to go to special schools/classrooms, live in special homes, go on special outings, and work in special workshops. If that were your life, would life be more vibrant or less? Do they have a better chance at meeting new people or worse?
Take a look at this video:
Joseph cannot drive, but he can ride the bus and he can ride a bike. It just so happens that every single Thursday, rain or shine, there is a group of people who meet in Northside for the “Slow and Steady Bike Ride,” a bike ride hosted and coordinated by Mobo, the local bicycling co-op to promote cycling for everyone, not just the hardcore spandex wearing pro’s.
Think about the difference between Joseph showing up to ride every Thursday instead of going on a bowling outing with other people with disabilities. Over time, he develops friendships with other people who love to ride, and that is exactly what has happened. He gets invited to parties, he gets to hang out for burgers after the ride, and he can go to their bicycle maintenance courses, or ride in a charity ride with them. The possibilities are endless, especially if he keeps going every week for the rest of his life.
The more that people with disabilities can share common typical space with others, the more they are known for the individual they are, instead of being seen as part of a group of disabled people.
We like to celebrate freedom and individuality in this country, so we know that choices are important to us: where to spend time, who to hang out with, what to eat, where to worship, how to spend our life’s work. It gives us a sense of confidence and let’s us express ourselves. Would your life be better or worse if other people made choices for you? If we had a time machine, we could go back and ask our teenage-selves that very question, and I’m sure we’d give our adult-selves a pretty quick answer “I can’t wait to make my own decisions!” And having a ton of choices doesn’t necessarily mean we’re all good. Anyone with cable TV will tell you that. It has to be the right choice. The personal choice. The choice with meaning.
For most people with disabilities, their choices are limited by someone else, a parent or guardian, or some paid staff involved in their lives – teachers, counselors, aides, program coordinators, caseworkers, executive directors, etc. There are degrees of this, of course. Some people have to do whatever their group home or day program plans for them. Others get to choose from a variety of outings on a calendar, but even still, those outings have been planned for them. The Slow and Steady Bike Ride wouldn’t be on that list of outings, for example.
Take a look at this video:
Ashley is in love with cats. Any cat! So she connected with Cheryl, who started a business around her own love of cats. Together, Ashley and Cheryl recruited everyone they knew who shared their love for cats and held the “Party for a Purrr-pose” to fund a “trap, neuter and return” program. Now, I’ve led somewhere in the neighborhood of 1,000 outings in the past 15 years. Never once have I led an outing to trap, neuter and return cats. But these ladies do essentially that like twice a week!
So for Ashley, our calendars and outings were woefully inadequate. She has found her tribe, so to speak. And they love her. They are planning the 2nd Annual Party for a Purrr-pose this spring. So even our best efforts to provide people with a diverse menu of options fall short of listening to a person’s heart. When we discover the “pattern” we were made for, it gives us meaning. It frees us to follow our personal calling, no matter how random or seemingly different it may seem.
What if you were only seen as a “taker?” What if your whole life everyone just saw you as someone who they were supposed to help or pity? We all get a degree of self-worth when we give of ourselves. Whether it’s satisfaction in a job well-done, doing a favor for a friend or neighbor, or volunteering for some civic function, being a “giver” raises our self-esteem and status in the eyes of others. It has something to do with reciprocation, fairness, and the give-and-take of connectedness we build our communities and relationships on.
Many people with disabilities are always a “client” or “consumer.” Someone who is using up tax dollars or the lifeblood of their families. This means employers don’t see their potential for work. Neighbors don’t see their potential for friendship.
Watch this video:
Mike has a job and is a taxpayer. He coaches a youth basketball team and has won an award for being such a great influence in the lives of those kids. And he’s one of my best friends. He is always there to joke about our rival basketball teams (Me Kentucky, him Indiana), and we hang out…fishing, having some drinks with the guys, wings, whatever. I should also mention that Mike is an avid volunteer with the Hamilton County Republican Party, but we don’t discuss politics and I refuse to send traffic their way by linking them here. He will not be happy when he reads this. Sorry, Mike!
His story is one of connection and contribution in many ways. People see him as an engaged citizen. They know his name because he shows up and jumps right in. We’ve offered outings for Mike and other people with disabilities to volunteer together at non-profits around the city, but as great as those chances are, they are still limited. When he’s on an outing, Mike isn’t seen as giving his personal talents, he’s seen as part of a group….of people with disabilities. So the status and appreciation he deserves/gets isn’t assigned to him. It’s assigned to Starfire. So we have help Mike be seen for his own unique contributions. When people appreciate our individual contribution, we are valued. The world opens up to us.
Growing in Relationships
Do you have a better life if you have a lot of diverse relationships? This is not about being an introvert or an extrovert. We all need some basic relationships, and a few deep ones. Relationships lead to love, safety, belonging and networks for jobs.
We all have some relationships of circumstance, like those we have with neighbors, co-workers and family, but the really really best ones are those we choose or happen into. They are based on some sort of shared and freely chosen connection….some kind of affinity or affection for each other. And we grow into these relationships over time, so they have to be stable and consistent to take root. And knowing each other changes how we treat each other. We’re more respectful and kind and patient with people we know than we are with strangers, so there’s something important and transformative about being known.
As we’ve seen for so long, most people with disabilities are limited to relationships of circumstance instead of relationships based on affection. And often, those “circumstances” are narrowed down to one small aspect of their personhood: disability. They only go to school with other people with disabilities, they only hang out with other people with disabilities, they only date other people with disabilities, they only play sports with other people with disabilities, they only work with other people with disabilities and they only live with other people with disabilities. I heard Tom Kohler once describe these as “relationship ghettoes.” When we think about it, it brings clarity of purpose, doesn’t it? We have to work to help people expand their relationships beyond “disability.”
Take a look at this video:
Krista last year was transformed into “KB.” Notice Aaron, who makes his first appearance at 0:24 giving the rock n’ roll hand signal with Krista. Krista and he connected through a love of creating organic and underground art. When they met, they immediately hit it off. Aaron, a punk rocker who owns his own screenprinting business, started calling her “KB,” and it stuck. She became “KB” to everyone, and started to be known as an artist and cheerleader for Cincinnati.
At the launch of her project, she asked Aaron to speak. He seemed shy, but stood up in front of a bar full of Krista’s friends and family and said “KB, you’re awesome. I’m so excited about this project and no matter what, from now on, you’ve got my heart.” As he spoke that last part, he pounded his chest with his fist.
It was beautiful and showed the potential and power of friendship and reciprocation. Their playfulness at 0:43 is beautiful….and their pose at the 1:12 mark literally takes my breath away. It ranks as one of my favorite moments ever. These moments sing out to us ”this is what is possible in life when we find each other!”
And this relationship has other benefits as well. Aaron and Krista work together at his studio every other Monday. You can imagine the possibilities.
Being respected and having dignity are a basic human need. We often think that our self-worth comes from our possessions – our homes, our cars, our ginormous televisions…But in reality, our self-worth comes from our titles, labels and roles. We are fathers, mothers, artists, writers, listeners, neighbors, employees, citizens, bread-winners, craftsmen, and a host of other things.
But we all also have our problems and struggles….what if those shortcomings defined our lives? Would that be a dignified way to live? Candice said it best in this post:
You could introduce anyone deficit first. My chronically lazy daughter. My useless and distant husband. My clinically depressed sister. My financially inept cousins. Oh look! There’s my infertile best friend, and her husband, the one who was fired last week. Over there is my brother, you know, the one who dropped out of college and impregnated his now ex-girlfriend. There’s my niece, the one who still owes me $200 and never visits family when she’s in town. There’s the uncle that was addicted to painkillers… you get the point. None of the absurd examples tell us anything. Neither does “my mentally disabled daughter.” I wonder what Betsy cares about, what she’s interested in? What’s the funniest joke she’s heard in a while? What was her 16th birthday like? What’s her style? I’m really less interested in the fact she has a disability. It matters, of course, especially to her and her family, but it doesn’t have to be that which defines her–especially if her brother is “the lawyer” and she’s “mentally disabled.” Brenda said it best once, and I’ll have to paraphrase, when someone is 50, they’ll still have a disability, but they’ll also have their inner self, things they care about, things they’re proud of, valuable roles, self-esteem.
People who have Down syndrome, or autism, or cerebral palsy, or some other kind of label like that are only known by ”disability.” What’s perceived as being “wrong” about them becomes their identity. It’s just degrading, plain and simple. And it’s wrong. It’s such a small part of who the person actually is.
Ronny decided he wanted to focus in on music, and in particular, drumming. Through his connections, he met Baoku and the two of them developed an idea to create an original show. They both had a belief that “hope” was a transformative part in their lives, so they made that the theme of their production.
So “Be Hopeful” was born. It was contagious and pretty soon it included not only drummers, but horn-players, guitarists and singers. It grew to include rappers, spoken-word artists and poets. It drew in Columbian dancers and eventually attracted around 500 people to two showings.
One of the cast members told me a story about him inviting his former professor to come to the show. The professor showed up and after the show said this: “When you invited me, I knew it had something to do with someone with a disability. I didn’t know what to expect. But this….this is legit.” This tells us that his expectations and imagination around what would be possible was lowered, simply because he knew a person with a disability was involved in some way. Somehow, he expected it to be less than “legit.” He soon learned, as did everyone who saw it, that not only was it legit, but it was one of the coolest things he’s ever experienced, all these different Cincinnatians from all walks of life, expressing hope for the future together.
And his mind wasn’t the only one that was expanded. The show I saw opened with a poet. After she read, she said that she had a six-year-old son with cerebral palsy, and that being a part of Ronny’s performance had given her new hope for her son’s future. Her expectations for her own son’s life were raised. She will be less likely to settle for the same old boring story around disability the world is perpetuating.
OK, all of that is great, but here’s the secret:
While all of what I wrote above is important, the true beauty of the Five Valued Experiences lies in how they interplay with each other!
You can’t make good choices without a lot of trusted relationships to advise and support you. You can’t be respected unless you can make a contribution others see as valuable. You can’t build really deep personal relationships without meeting a lot of new people in new places and being respected by them. And these five valued experiences go on and on like that, criss-crossing and strengthening each other.
Again, this has been written about in many places before, notably by John and his wife Connie Lyle O’Brien. But I wanted to make sure and emphasize just how important I think this is.
They are the single best framework I’ve come across for how to begin to build a good life for anyone, but especially for people who get labeled “disabled.”
So now that you’ve got the basics, here’s how we used them to launch Starfire on a learning journey:
In the fall of 2010, we held two “Cafe Conversations” each month around one of the Five Valued Experiences. September was “Sharing Places,” October was “Making Choices,” November was “Making Contributions,” December was “Growing in Relationships” and January of 2011 was “Experiencing Respect.” Anyone was welcome to attend – staff, families, Board members, volunteers, funders and the community at large. Jo and Scott Osterfeld alternated facilitating.
We designed each conversation to be about two hours. We would gather in small groups, and start with a simple question: “What are some shared places in your life and why are they important? What would life be like if you didn’t have that shared place?” People would listen to each other talk and then we would have the groups shout out the wisdom they heard from each other. They would, of course, say how important all of those things were and give awesome and practical answers that we’d never considered. It was a powerful demonstration of the common sense of this framework. Then we’d ask them “How would you help someone share more places?” and they would come up with tons of ideas.
Finally, we would tell them to grab some markers and paper and “imagine it’s 2019.” We picked 2019 because it was far enough in the future that our imaginations could stretch, but we wouldn’t be in flying cars or on megabuses to Mars by then. (And we felt a “2020 vision” would eventually become too cliché.)
They’d struggle at first, but eventually came up with some pretty inspiring images of the future.
We combined all of that wisdom into a Prezi, which you can check out here.
Those conversations changed our ”organizational conversation.” We stopped worrying so much about “independence” and “respite” and “peer interaction.” We started to see that everyone needed these things in their lives, and we started to imagine ourselves in the role of helping foster that spark. And it wasn’t something handed down from on high by the Board or Executive Director. It was common sense stuff that everyone had lent their voice to. It was a “shared vision of a desirable future” as John had written in one of his articles.
The last bit I need to tell you about the Five Valued Experiences is that they’ve become a “job description,” of sorts. We can tell how good we’re doing by thinking about each of the valued experiences, in turn.
As anyone alive today knows, one of the self-inflicted evils we’ve created is a fetish with measurement. (I say “evil” and “fetish” half-jokingly, but there’s a bit of truth to it: will we ever be good enough to live up to the standards we set for ourselves?)
So I set about trying to find something that would measure social roles. I either stumbled upon or was sent this tool, developed (of course) by John O’Brien. We studied this and thought it would be beneficial to do a John O’Brien mash-up, so we combined the Five Valued Experiences with these Eight Sectors of Community Life, and came up with this:
It’s not very pretty, but our logic is that if we help people share common places, make choices, make contributions, grow in relationships and experience respect in each of the sectors, we’d be making some significant progress. It’s way more holistic than this diagram, but it seems to help new staff, in particular, think about small steps to start.
This post could have been called “A love letter to John and Connie and Jo,” but they’d not like that, so I’ll just leave it here, in the conclusion.